Polycystic ovarian syndrome (PCOS), whose international day is this Sunday, affects approximately one in ten women. Despite its high prevalence, this hormonal disorder remains little known to doctors and leaves women very alone in the face of sometimes very disabling symptoms.
PCOS is characterized by the excessive production of male hormones and the abnormally high presence of follicles – and not cysts as its name suggests – on the ovaries. Florine Gérardin, a saleswoman, suffered from it from her first period, which came early, around the age of 11: “I gained a lot of weight, 10 kilos in a year, and a lot of acne, and I developed significant body hair. I also started to suffer from depression.”
Medical wandering
A few years later, still a teenager, the young girl suffered from “very irregular” periods, sometimes lasting three weeks. She then consulted a gynecologist, who despite “all the signs of PCOS”, did not provide her with any diagnosis or solution. It was only much later, around the age of 20, that an endocrinologist, in view of her symptoms, prescribed a hormonal assessment and an ultrasound, and told her about the syndrome.
“A relief” after years of medical wandering, immediately spoiled by the doctor’s speech, who told her that “it’s not serious and that there’s nothing to do. He also told me that it would be complicated to have children.” A diagnosis synonymous with fatality for Florine Gérardin.
Indeed, PCOS is often a factor in infertility. While at the beginning of a normal menstrual cycle, each ovary contains 5 to 10 small follicles, one of which becomes a fertilizable oocyte, in PCOS the follicles are very numerous but their development is blocked by male hormones.
“My period hasn’t come back”
In the case of Émilie Cotta, 33, it was precisely infertility that was the warning signal: “when I stopped taking the pill at 31 to get pregnant, my periods didn’t come back.” Having been on the pill for over ten years, the young executive also suffers from acne, without knowing the cause. After 9 months without a period, the young woman went to an infertility specialist and was quickly diagnosed, which allowed her to start a PMA (medically assisted procreation) process directly.
Now pregnant, Émilie Cotta feels she was “lucky” to have been “well taken care of”. Despite everything, she remembers, like Florine, the feeling of loneliness when she was diagnosed: “It’s a personal matter, I didn’t want to talk to my loved ones about it, and burden them with what I saw as bad news”. Like Florine Gérardin, she joined the patient association Asso’SOPK: “Talking to strangers who understood me helped me a lot”.
Hope for a basic treatment
Before that, Florine “got by on her own”: ten years ago, she couldn’t find any information about her illness on the web. Until the day she had the idea to do the research in English, and then “a world opened up to me”: “I finally understood the mechanisms of the illness, and thanks to a healthy eating routine, better management of my blood sugar, I managed to lose weight, regulate my cycles and better manage mood disorders”. Today, the thirty-year-old assures us, she has managed to “calm most of the symptoms apart from fatigue”.
Émilie Cotta highlights the lack of awareness of the medical profession, which according to her comes from the fact that “we don’t talk about it during medical studies, and for many doctors, these physical symptoms have no impact on future life, it’s almost a comfort treatment”. However, if poorly treated, PCOS causes long-term complications: an increased risk of diabetes, cardiovascular disease and endometrial cancer.
Preliminary results of a study published by Science in June open the possibility of a first basic treatment for the disease.
